Lisa Peters’ blog, On a Life Less Perfect, illuminates the fierce nature of decision-making confronted by long-term caregivers. She and her husband care for two sons, Weston, who struggles with Attention Deficit Hyperactivity Disorder, and Nicholas, who was diagnosed in 2002 with Prader-Willi Syndrome. PWS is a genetic disorder with a host of symptoms, including behavioral and cognitive challenges, seizures and, as Lisa puts it, “…a bizarre and life-threatening uncontrollable appetite.”

She says:

I have learned that special needs parenting is all about making decisions.Big decisions.

Not the “what am I going to wear today” kind of decision, but the kind of decision that can make the difference in the very quality of my son’s life.

He was surrounded by some very unique educators. Brave, caring folks who were willing to go that extra mile to enable Nicholas to become wholly included in the public school environment…

… although academics (are) an important aspect of the school day.., what is MOST important to a child diagnosed with special needs is the feeling that...they are valued and included in what is going on around them. That they make lasting and quality friendships…

Achieving this is difficult however, and requires trust, respect, communication and the freedom of out-of-the-box thinking between parent and teachers…. As a result of this special partnership and silent solidarity between parent, teachers and students, Nicholas thrived and from an inclusion standpoint, had one of the best school years of his life… 

Nicholas and one of his brave, caring teachers.

She decided to try for another year with these teachers, but ran up against the usual difficulty caregivers find in dealing with administrations.

I had to FIGHT. I had to dance and sing and slay.....doing everything in my power to convince administrators and Nick’s IEP team that this choice was the right choice, the only choice for Nicholas.

She prevailed. However, all summer, “...the doubt that plagues every decision every special needs parent will ever make returned and I asked myself if I had made the right choice?”

Lisa says, ”...when you are the parent of a child diagnosed with special needs you have no more secrets. You cannot hide your child's differences.”

But even before the school year started, she found her son’s educators, “…eager to come up with new and exciting ideas for educating their incoming students on the importance of inclusion.”

As in the past, she was asked to speak with Nick’s new classmates to tell them about Prader-Willi Syndrome.

When Nick and I had finished speaking, hands flew up into the air. The children wanted to know more, only this time, they did not want to know more about PWS, they wanted to know more about Nick, asking:

...And suddenly I realized that they could already see Nicholas. Not as a child with a scary disability, but instead as an interesting classmate, someone worthy of getting to know.

Her most recent post, expands upon the peril of decision-making. “A Very BIG Decision” depicts how Lisa and Nick are caught between risk and hope. One of Nick’s long term medical providers, had...

…been asked to participate in a clinical trial for a potential new drug designed to target hyperphagia (uncontrollable eating) and obesity, both severe issues.”Lisa says: Tears begin to roll uncontrollably down my cheeks. I am overwhelmed with emotion, knowing that we are getting close to finding a cure for the uncontrollable hunger that plagues my son every single second of every single day.

But when the fierce emotions pass, she states,

...questions began popping up in my brain. How often would we need to come to Boston? How much blood work would need to be done? How long is the trial? Is it an injection or a pill? When will this happen? How much school would he miss? And perhaps most importantly.......what are the risks? …Is this just more false promises or could we be a part of something very, very big?

Through hundreds of beautifully written posts over the last four years, Lisa has not only portrayed how dependent a caregiver is upon acceptance and understanding, but also how a single small decision becomes overwhelmingly consequential to her childrens’ futures. The decisions faced by every parent are magnified by a child’s special needs, and the caregiver is often caught in circumstances outside her control, even after she has been able to successfully “…dance and sing and slay…”

About the Caregiver Blog of the Week Award

The Caregiver Blog of the Week Award will recognize the most outstanding, beautiful, uplifting, painful and/or moving story of the week blogged by a caregiver.

Caregivers are the unsung heroes of our world. Caregivers who not only do the more-than-fulltime work of caregiving but also write and share their experiences with the world deserve to be recognized and honored. Each week our team will sift through the caregiving blogosphere and select a winning blogger, blog or blog post to be honored at CAREGIFTED.ORG. Email us at info@caregifted.org to nominate a Caregiver Blog of the Week.